Many of you know I have been dreaming and waiting for the iLet pump to come to trial here in San Diego. I have been watching this pump since the early 2000’s! It was everything I wanted in a pump. Both hormones to handle highs and lows and the big one, no counting carbs. Just tell it if it is a normal meal or bigger or smaller. Just think no more weighing or reading labels!
So UCSD when I first started up with them on some trials, I told them this is the one I wanted. I would do any trial they wanted/needed me to do, if I could get in this one. So many trials later, I officially started it last month. We did all the paperwork and than eagerly waited for the computer to spit out if I was in the trial or control group. And trial it was!!
First, cartridge changing is more than my good old Minimed/Medtronic days but similar to my current Tandem set up. So not a deal breaker.
Infusion sets are currently just one type & it is an auto injector type which I do not like at all. But they went with what most people use, so us manual types and metal sets are unhappy.
It is easy to use all the different screens and there are a lot of them. The alarm is not very loud which for some is great and others not so great. It is a little smaller than my Tandem and lighter, again not a big point for me but might be for other.
But for the first time in all the studies I have done, I don’t know if I am going to make it through the full 3 months. I just don’t drop out. I know, they need this info to make the study work and if people drop out, the study might not make it.
So here are my downers.
I was told, it takes about 2 weeks to really learn you and your eating, exercising, sleeping, work habits. Well, I am a month in and it is still all over the place. I don’t mind letting the system learn and do it’s thing but it is not getting any better. My Tandem with my time in range being in the 80-90% most everyday, I went to 40-60% most of the time. I think I have had 2 days over 80%. And looking at its backup plan it does have most basal rates set very close to what I had in my Tandem but the correction started out at 110 after the first week (Tandem was 100) and now it’s 85. Talk about some major crashing.
They ask for you to eat the same type of meal. Some kind of carb count so it can learn what your usual is. They want us to not do big huge meals so it will figure things out. I do really try to eat the same amount of carbs for each meal. Not fun but I thought 2 weeks, ok but here I am still eating the same kind of stuff for each meal. Not fun!
I remember looking at charts during some of the videos I watched over the years and saw that beautiful flat CGM line. I thought I was going to get that. Not even close!
Now I know those early studies had both hormones in it and this one is just insulin,so maybe their system just can’t manage without the glucagon to handle the lows. I don’t know.
But my dream pump is actually a nightmare for me right now. It is not easier. I am answering alarms, mini dosing with carbs so I don’t stress the system and watching the highs that follow and can’t do anything. There is no way for me to do a mini bolus. I am hoping that is a trial standard but the beg us not to add insulin into the mix as it will mess with the computers learning. So for hours I watch blood sugars way higher than I want and I have to wait it out.
And another huge problem for me is snacks. They ask for us to just eat the 3 meals, spaced apart and no snacks.
I don’t know about you, but sometimes a bowl of popcorn with a movie, or an apple while reading or a nut bar while walking. Just is not life without snacks!
So my dream pump needs some work! I don’t know if any new system that requires more work is a system I want or need right now. As you all know, I want easy! After all these years, I want easy! So we’ll see if I can continue on with this one. I want to make it work but I am doing everything they have asked us to do and it still isn’t working. I have my 1 month check in this Friday and we will talk about how to make this work or if for my physical and mental well-being, I should pull the plug and go back to my new dream pump, my Tandem IQ!
Doesn’t mean I will stop trials, but this one might be my first one I don’t finish.
Holy cow. Thanks for that in depth description. I was also considering this trial. I decided the drive down there was going to be too much, I’m in losangeles and although it seems close it’s a long drive.
Hopefully it gets better and maybe they will move it north a little UCLA or something
I don’t understand the fascination with the pumps that use “learning” feature. I really like Tandems approach of the user setting the basil rate and the pump making small adjustments to keep you in target.
Day to Day life is so unpredictable I don’t know how a pump can make sense of the BS input (stress, no stress, shopping, hormones etc.) to “learn” without additional details of what is causing the BS movement.
Transplanted islet cells is the only way we will get hands off control
I check up on Viacyte and Sernova every month. I honestly believe the DIY solutions are about as good as we’re going to get; AndroidAPS w/ some code modifications can do 80% TIR without meal announcements. Maybe I have no imagination but cells and/or smart insulin are the only paths forward and with how far the above companies are that’s where I put my “in 5 years…” (which I honestly kind of believe for once). Sernova has a patient insulin free for almost a year now though they are on immunosuppression drugs.
Sally, I am surprised by your report. Like you, I was very hopeful that Beta Bionics would produce a breakthrough technology that would relieve the user of the cognitive burden of glucose management. I can only hope that the company is learning valuable lessons with this trial and can adjust their tech to meet the promise of “hands off” treatment.
An automated insulin/glucagon dosing system that can learn the unique metabolisms of our population seems like the holy grail of diabetes tech. From the various reports over the years, I thought the company was well on its way to making this happen. Your report gives me considerable doubts.
I’m now in my fifth year of using the DIY Loop system with an old Medtronic pump. This open source grass-roots driven effort has produced incredible results for me and substantially improved my glucose management and quality of life.
But it does not give you the “easy” which you seek. I think it’s easy because my interventions are fewer than previous pump therapy and the results so much better. It’s a good match for me since, as a retired person with good insurance, I am willing and able to give my therapy the attention it needs. But the “blank-check” commitment I’ve made is not what most in our community are able and/or willing to make.
I get the diabetes burnout aspect of your desires and I think your situation and mindset is much more representative of the insulin-treating diabetes population than mine.
I do believe that the dream of Beta-Bionics will be realized but it may take longer and possibly be achieved by a project we are not even aware of yet. We will need to exercise more patience, a tough ask from those of us who have lived decades with this disease. In the meantime, at least we have some technology like DIY Loop and and Tandem’s CIQ system that provide an adequate place to wait.
By the way, I’d love for a biological solution like implanted beta cells, but my interest in that effort stops cold when immunosuppressive drugs are required.
Thank you for your selfless contribution as a test subject to move the tech forward!
Thanks for taking the time to write this up.
Yeah, I agree I am so sad to see it isn’t what I thought it would be. But I do think it could work but I think pushing it without both hormones might not be the way to go. I think it could be much more aggressive if it had the glucagon component to it. But currently with just insulin, I am up and down all day long. Those great graphs I have seen on some videos with the flat lines are not what I am seeing now.
I am just looking for something that is easy, doesn’t need my attention all day long. And I know you said with your retirement, you have the time to focus on it. I am hoping when I get to my retirement, I won’t have to think at all about it. I am hoping for grandkids in my future so I can spend all my time spoiling them and not thinking about my diabetes! (This is a wishful hope but no pressure on either of my children. Their call not mine!)
And while my Tandem has made my life so much easier and the joys of no testing using the Dexcom G6 has made things very freeing!
Will this system do what I had hoped? Maybe but this is why they do trials. And it would be a big sell job to sell this system the way it is set up right now. Currently, as it is set up, not in my future.
I like the fact that it does everything, but all computers need some help sometimes and this one just doesn’t give me that option. They don’t want you messing with it because it messes up the system. But wow, it is hard to see those high blood sugars and be able to do something.
I will be talking with them tomorrow about whether it is helpful to continue. But as every other trial I have done, there is good and bad to everyone of them. And yes sometimes my control is not what I would like. But I understand how necessary these studies can be.
We will see if I can hang in there. I would like to see it through.
It is funny that when we set up the iLet pump and let it run for the first week based just on my weight, it was running basal rates pretty close to my Tandem. And it also at the beginning had my correction factor very close.
And while this kind of pump will ever learn me completely but I can’t learn me completely. I mean one day I have a FOTF morning and the next I won’t. Or today stress send my blood sugars crashing and the next stressful work day sends it soaring. These “learning pumps” get to learn your normal not the off kinda days. But that is what the sensor is for and the pump makes the adjustments.
I must say, I am in love with my Tandem and really can’t wait to get back to it. I don’t really need to do basal testing anymore because I can look at my Tandem reports and see if every night I need more insulin than what the basal is set at. And with this system,I literally don’t look at it unless I am eating.
This new pump, I also only look at it when I eat but that is because I am not allowed to do anything.
And if they can ever get the dual hormone set up,I would give it a go. But until they test the 2 hormone set up, it will not be in my future.
As I have said over and over, I want easy. Diabetes is a pain in the butt! I am just so over all the work. Over all that testing, over all those injections, over all those lows,over all those highs, over counting & weighing everything, over doing the math gymnastics with each meal, over trying to calculate how much to increase or decrease insulin doses. I’m over all that. And thankfully my current system has removed many of these. And not counting carbs would put the biggest smile on my face! Just think no more weighing, reading labels, figuring out serving sizes. Yes,I am in but I will be waiting.
I would also be so in on “smart insulin’s”. Just think an insulin that turns on and off just like a body is suppose to!
I couldn’t agree more!!
I’m a pretty lazy carb counter and pretty much give standard boluses based on small, medium and large and adjust from there.
Hi Terry4, I’m sure you’ve probably talked about this quite a bit previously, but I wondered if you could please signpost me to some info about the DIY loop you use? Or is it literally so DIY that you’ve made it to measure 
@CharlotteEngland – Check out Loop and Learn, an outstanding resource. Here’s a link to LoopDocs, another manual with step-by-step instructions.
There’s also a Facebook group called Looped where people can ask questions if they get snagged on technical issues. It’s the equivalent of the toll-free help phone number that commercial companies use to provide answers to user questions.
DIY Loop has been adopted by many normal non-technical people. Implementing it requires careful reading and following instructions, but does not require a deep technical resume.
There are several varieties of DIY looping. I use the one called Loop and it is comprised of a Medtronic 722 insulin pump, a Dexcom G6 CGM, and a radio translator called RileyLink. The brains of this system reside in an algorithm that’s installed on my iPhone XR. There’s also a Loop system based on an older model (Eros pods) of the Omnipod patch pump.
Other DIY loop systems use an Android phone. Another iteration of DIY looping is possible with a South Korean pump called Dana. This pump is not available in the US. I believe it is available in the UK and/or continental Europe.
If you perform a TuD search (accessed using the magnifying glass icon) using the term, “Loop,” you come up with many threads published here going back to 2016.
Ok, well my journey with my “dream pump” came to an end today. I pulled the plug early. Only got through almost 8 weeks. I was suppose to be in until mid June but I couldn’t take it anymore. Even my husband last night when I told him I was going to end it, said something very surprising. He said he was very glad because I wasn’t as happy as I use to be. It is amazing how blood sugar control makes others feel around you.
So, after my 8 week journey, I think I got over the 80% in range once. And there were days in the 40% in range. The swings from one extreme to another were not fun and stressful because all I could do was watch the highs and wait for the crash and than pop some tablets. Almost every night I was in the 200’s around midnight and would ride that high wave until around 4 with a low alarm.
I am sure the algorithm is set for 2 hormones not one which is why I struggled so much. I was at first pretty sure it was going to work because most of its backup settings were close to my Tandem. But as it “learned”, things got weird. I have never been at an 85 correction rate during the day, which is what was causing the lows. So how it unlearned the fact that 100 to 110 was the correction rate, I don’t understand.
I am no computer scientist, but I will say in a pump. We need easy and accurate.
I am now up and running with my Tandem. Called them last night about pulling it out of storage mode. And they were very helpful and everything went as planned. And I have a great CGM reading right now, with a breakfast and walk. This is what I am use to. See the CGM reading & make a decision on what to do. And after all these years thinking 24/7 about my diabetes, anything to reduce the amount is heavenly! And I thought now not having to count carbs and weigh things and read labels would be great. But alas, I think is pump is not ready for prime time. At least not until it has the duel hormones.
So will I volunteer for another trial from Beta Bonics with both hormones, you bet! Like I said, I have been watching this since the early 2000’s. It was and hopefully will still be my dream pump! But until that moment, my Tandem IQ gives me everything I need. Still have to count carbs but a great night sleep and a great starting point every morning is just great for me!
Well thanks for being the lab rat on this one. I think it has promise.
I did an inhaled insulin study 20 years ago. I was so excited by the idea.
But I still had to take basal injections. And they wanted me to reduce taht and use more of the inhaled.
The inhaler was much bigger than afrezza. It was about 8 inches long. You could only take either 1 or 3 or 10 units.
Taht equated to 3 units 6 units or 20 units.
I never used the 10s. I had a hard time on it. My a1c went from 6.9 to 8.5. It was a year long roller coaster.
I would inhale, cough and have no idea how much insulin it delivered.
I hear most people on afrezza are very happy with it. I think they worked it out.